Beckystar... just curious how you made out with the new doctor on the 7th? I have been looking at a lot of blogs and see that many women are going through the same thing and doctors are taking way too long to diagnose/treat them...
And to answer some questions, YES... endometriosis can still grow after a hysterectomy. My partner is living proof!
Here's my partner's history:
in Jan 2006 at age 37 - went to ER - bad cramps - bleeding both rectally and vaginally - diagnosed with ovarian cysts and hemorrhoids - antibiotics to shrink cysts and hem cream
in May 2007 at age 38 - was still having same symptoms but was dealing with them the past year - now worse and back in ER - doubled over - bleeding both rectally and vaginally - cramps - gas - pressure - pass blood and then relief - diagnosed in ER with bilateral hemorrhagic complex ovarian cysts and CA125 elevated, which means either cancer or endometriosis. Had to quit work since she did manual labor which she could not perform any longer
Nov 2007 - still age 38 - hysterectomy - all but cervix removed - worse case of endo this doctor had seen, was attached to colon and had to be scraped off (ulcerated sigmoid)
Feb 2008 - now 39 - felt some relief after hysterectomy and vaginal bleeding is gone, but still having some GI discomfort and hemorrhoid problems with severe rectal bleeding - hemorrhoidectomy performed - worse case of inside/outside this dr has seen - treated for IBS
July 2009 - now 40 - symptoms never went away, just got a little better for a while and then really bad - after more tests and colonoscopy's they weren't sure what they were looking at on the inside - did a laproscope and found a lesion where endo was eating away at the colon - the surgeon removed the scope and then went in surgically - resected 2 areas of colon and removed appendix - areas were sent off and endo confirmed again
April 2010 - now 41 - GI problems went away for a few months but returned - sent to another GI specialist - many tests later, was given a clean GI bill of health - no IBS ro Chrohn's and sent back to OB/GYN
May 2010 - back to being doubled over - bleeding horribly rectally - pain - pressure - gas - cold sweats - irregular bowels - for days at a time - still can not work - can't even schedule a day to go to an amusement park without fear of needing the privacy of own bathroom - no life whatsoever
June 2010 - waiting for appointment with the new Ob/GYN on July 6th...
So, to recap:
hysterectomy - all but cervix
not on any HRT due to family history
still out of work
can't plan to go anywhere - no quality of life whatsoever
endo removed in 2007 during hysterectomy (colon scraped)
endo again removed in 2009 ( 2 resections plus appendix)
endo is suspected again - just waiting for appt to confirm
anyone else that has stories, please post... maybe one day this will be diagnosed and treated quicker if more people see our posts...